Connection is more than just a click

Engaging in online activism can't replace putting a face to a name or chatting over a cuppa, but it can help some people with disability to participate and it can still get things done, writes Jodie van de Wetering.

The internet has trickled into every corner of our lives, influencing everything from how we shop and play and chat with friends, to how we earn a living. It's also potentially opening up a rich, new avenue for public awareness and activism work. Or is it? Can we change the world with a click and a share, or is online activism but a fleeting shadow of work done in the physical world?

Online activism can come in many guises. On one hand, old-school tools like letter writing and petitions have been given a new way to circulate and gain momentum, and there are fresh digital canvases for political satire. On the other, new means of voicing an opinion have developed, from advice animals to "like/share/re-pin if you support..." memes designed to show solidarity and spread awareness.

Through blogs and forums, the internet also gives people with disability and other minority groups a way to find each other and build a support network that's not always possible in real life. With Autism Spectrum Disorder affecting one Aussie in a hundred, for instance, there are potentially more than 600 other people in my hometown who are somewhere on the autism spectrum. There might even be a few of similar age and situation and outlook to me.

But I don't know any of them. I've looked for them, but the Aspie can be a discreet and solitary creature not easily discovered. Online, however, it can be much easier to find a community where you belong. There isn't just one online disability community but myriad, inhabited by different people and serving different purposes from support to snark.

Online activism has pluses and minuses, just like similar work in the physical world.

The internet lets people get involved in public discussion and debate without needing to be physically present. Online, there are ways you can participate regardless of family, work or study commitments, geography, shyness, health, or the accessibility of the venue. It can be done by stealth, under an assumed name if necessary. The many different ways people express themselves online means there are tools to suit many different means of communication, from video blogging to text-based conversations that give the participants more time to process the information and compose a reply than conversations in person allow.

A potential downside is accessibility; not just the accessibility of individual websites but access to the internet itself. By moving too much of the public conversation about disability and related topics to online spaces, do we risk fencing out people who have a stake in the issue but not the resources to take part?

And since your likelihood of being online decreases with your income and level of education, those left outside the walled garden may be the most vulnerable, the voices that most need to be heard. But the Australian Bureau of Statistics tells us 83 per cent of Australians used the internet in 2012-2013, a figure that continues to climb, so perhaps those concerns are less grounded than a few years ago.

Then there's the question of whether a share or a like, without offline action to complement them, achieves anything at all. Other than make us feel like we've done something useful, will a tweet or a shared meme on our Facebook wall get the attention of our local MP the way a letter on their desk would?

The sheer volume of traffic on the internet can make it very hard for any individual voice to be heard above the endless cacophony of digital noise. There's always another tweet, another meme, another issue to snatch readers' attention away. Online, you're not just competing against other speakers or letters but against every cat video, every app that lets you put cartoon moustaches on your friends' photos, and every piece of My Little Pony/Breaking Bad crossover fan art. Such things are less likely to present distractions when you're talking to someone in person.

Despite the many changes and advantages the internet has brought, there is still a place for physical togetherness. An email to People with Disability Australia confirmed that even for events and gatherings where online conferencing is available, people still travel great distances to attend in person, despite the expense and logistics involved.

You might be able to watch a speaker online or browse their slides, but you miss the chance to talk to your fellow attendees over a cuppa, to meet people you'd never find on Facebook because you don't know they exist to look them up. Fresh connections form between people as we mingle around waiting for our go at the urn, and fresh connections form between the ideas we share during idle conversation over a tray of sandwiches. The internet has given us wonderful new ways to network, but even as a massive nerd with a clinically significant degree of social ineptitude, I have to admit it can't replace free-range in-person human interaction.

Participation online opens new doors for people who may not always be able to participate in physical spaces, and can provide an amplifier for voices usually silenced in mainstream debate. It may not be the new way to get things done, but it's certainly a new way to get things done.

Jodie van de Wetering is a writer, Aspie (person with Aspergers) and massive nerd based in Central Queensland.

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Comments (10)

BenH :

Great article.I get the whole problematic communication/interaction thing as I'm an Aspie too.

I find I go on and off Facebook, and other social media; for a while it interests me, then I get consumed by it, and then I have to take a break as it wears me out.

Ironically I lost my internet for a few days recently and the impact on my traits including OCD was phenomenal; I literally spent days trying to fix the problem, losing sleep, losing the ability to relax, and just feeling worn out.Then I figured out how to re-image my PC and problem solved; a non Aspie would probably have called up an IT service, or something, but my Aspie persistence pushed me on to resolve the issue myself.Much cheaper than hiring someone, and better than packing it in and getting a new computer. I'm not IT genius, but these days following instructions on advanced settings on your PC will solve many problems that previously required a specialist.

I am really passionate about social issues including stuff here on Ramp Up - which I hope will be followed up on the ABC website post 1 July, and was into Get Up, but the barrage of emails, and invitations to attend rallies and the like just got too much.I can handle going to the library or the shops, I can use public transport, and I can drive, but these days I can't even handle going to a live music gig, the crowds, noise and over stimulation is just too much.

Clicking on like or adding comments to a campaign may sound a bit like slacktivism, but at least it's a way of feeling we are participating without pushing so far out of our comfort zone as to create detrimental effects on our well being.

Amelia :

18 Jun 2014 12:46:43pm

I wholeheartedly agree that much of the activism for disabilities such as autism takes place online. The "neurodiversity" movement had it's beginnings online. I also agree that it's difficult to meet with fellow likeminded "aspies" in meatspace because they're few and far between. Finding someone on the spectrum these days is easy enough, but finding one with the same goals and ideals to co-engage in autism issues with is even harder. Hence why many who wish to engage in activism resort to online.

There is an adult autism meetup group in my area but I had a bad experience some years ago with the mental health professional who facilitates it so I don't go.

Jodie :

19 Jun 2014 12:06:33pm

That's very similar to my experience - the spectrum's so broad and varied that it's not just about finding someone who shares your diagnosis, but your outlook on it as well. The internet was *so* useful in the aftermath of my own diagnosis, because it wasn't until I found some blogs by other adults on the spectrum that I really started to get my head around it all. Not just the big things like the neurodiversity movement and the social model of disability, but practical stuff like how to handle a job/family/life with sensory sensitivity.

BenH :

25 Jun 2014 4:45:04pm

I know how you feel Amelia.More than a decade ago I was involved with a group of people with mental health issues, some of whom I could relate to some I couldn't.I was very confronted when an Aspie I knew at the time pointed out to me that he thought I had Asperger's.I was not ready to even contemplate it at the time, as I had previously been hospitalized after a psychotic episode (twice in 2 years, the first being a case of being sectioned at the age of 17).I had since been diagnosed with depression and had a divorce behind me, so confronting the feeling that I may be an Aspie was too much to contemplate.Last year I was finally diagnosed with Asperger's, and this year I have realized I almost certainly fit the criteria for Bipolar 2 as well.

Knowing what condition you have to live with and reaching acceptance about it is a long and difficult road; finding like minded people to engage with seems just as difficult, especially when trying to avoid people with hidden or not so hidden agendas.

I don't know what the solution is (there is an advocacy group for people on the Autism Spectrum in Australia and New Zealand, but it seems to be a tiny group based in Adelaide).Perhaps I'll just have to wait and join up with a mens shed group or something when I get older, because there certainly seems to be little around if you're not a child or teen, and many of us in middle age are only just finding what it is we've been living with all these years.

Good luck Amelia, and though I don't know you, you know that as a fellow Aspie I have full empathy for you, just don't expect any hugs!

Jax :

18 Jun 2014 10:01:23am

I am going to miss reading RampUp (budget cuts)

You can participate in other areas, and I do, because the aforementioned ability to actually interact without having to leave home. And not slightly because when I need to spend a lot of time "just sitting" because of physical exhaustion, I can pretend while doing that, that I am actually still a human being and part of the human race. BUT!

Most fully abled people (and this includes me prior to my situation now) simply cannot grasp the everyday, every minute implications of just how things are. The things that used to be little things that you wouldnt even notice you did, that now become full on conscious effort and exhaustion. Defeat. Try again. Tears. Frustration. Determination. Defeat again. The stoicism born out of, not apathy, but the need to maintain sanity and not be driven right over the edge by things constantly going wrong.

They just dont "get it" and see us through the lens of their own experiences which dont include any of those things. So to them, we are either exaggerating, or wanting "special treatment" we are not entitled to etc

Does anyone else just go quiet, button their lip and just stare? How do you explain to someone something they still wont be able to grasp? So we go quiet, and go away quietly.

But among others who "get it" we can open up, talk freely, actually say the dumb things we did or things that happened, the tears, the fears, and those others "get it". And we can even laugh about some of those things together, knowing the daily challenges. Not be laughed AT.

The challenge of course is that we dont have the same "mobility" to just pop in for a chat in person. And so forums such as this are so so incredibly important. A meeting of minds, where the bodies cannot follow.

I understand that in the current budget (and the NDIS) we are seen as expensive burdens. A theoretical problem to be addressed. A drain on numbers on a page. I would say the govt, try our burden for just one day. Then come back and discuss who is carrying the greater load.

We cant just knock off and go home and leave all this at the office. But by all means, dont target those who might be a little more able and mobile and who take lots of holidays and do things many/most of us cant. Instead, lets take away something that those who "cannot", can use.

Let's remove our "voice" as well as our abilities. Does that mean that once its not heard, it no longer exists in the eyes of the public? Or will our own voices be replaced by "learned colleagues" who speak for us instead? People who never walked the walk and truly do not know how life is? People who (being paid to write) are not only clueless but will write what they know the person paying wants written.

Vanessa G :

19 Jun 2014 2:00:38pm

Jax - what a thoughtful and articulate insight into your world. Thank-you. I'm editor of a new mum's and carers website called Momble.Me - and you should set up your own blog there. The ABC's cutting of a community site you've come to trust like this is terrible. What a shame and a waste if it serves to practically silence clever and articulate advocates like you talking to others who "get you". Momble.Me is about encouraging small-group support networking for people with common interests, not just geographical proximity. It's all free, non-commercial or marketing-driven (although businesses do offers prizes to win) and we write what we like (there are no "sponsored posts"). If you register as a user send me a friend request - I'm GOULDY - and I can help navigate around it, or send you direct links to things. Hope to hear from you. You're a brilliant writer!

wheelie :

16 Jun 2014 6:41:49pm

It is now pretty much too expensive for some people, mostly singles on their own, students, pensioners, low income. If one is paying rent and a phone forget it. OK if you can get down to a Library. Many of us don't have one nearby.

Under the current Federal govt. with its cut backs - expect more and more of us will be disadvantaged and use of a home computer will be a distant dream.

I can't afford to go to meetings in the city and most public transport is still inaccessible.

Online chat rooms are great for those of us who are somewhat housebound from our disability or area, transport (lack of) etc. Many of my friends have died from disability, infection etc. so I rely on Ramp Up for companionship.

In a southern winter I don't like the cold and going to meet people at shopping centres etc. in my wheelchair is too much.

Chris F :

16 Jun 2014 1:44:59pm

Sorry folks, this is a bit of a long one.Then there's the Cost of the Ink to Print. A LOT of Govt including Disability websites are increasingly Relying on the Consumer to download or print info. I consider 20 - 50 page (&more) booklets to be Beyond the Range of the home office - it is far more Reasonable & Economic for Business / Commercial equipment to deal with that scale.The end result is Govt Depts keep on Leaving me Behind - I've even had my Pension suspended ( & reinstated) due to my Inability to Navigate the Technology & my poor physical Mobility. Even tho' it might suit some ppl - I Limit the use of emails & texting. For example, I don't need the Stress of receiving Multiple txts for a Bill - OMG it's due - OMG u didn't pay it yet- OMG you paid it... totally Un-necessary; I have the Receipt.There is a time & place for Both old school & New school methods of communicating.

Chris F :

16 Jun 2014 1:19:26pm

I definitely agree with the " Pluses & Minuses". You can find great support & be anonymous, online, But there are a LOT of things I just wouldn't Risk saying online... you never know where all those "shares & likes" & friend of a friend will end up. You often Lack Confidentiality on the Interwebs ( unless you use a dummy name / account.)On the one hand Real Life ppl are often Frantically Busy - both in person & on the phone = they Don't Listen &/ or they don't Comprehend, but on the other hand, in a setting that allows you to sit down, relax and Be Informal - I have been privy to quite a few extremely Fruitful conversations where ppl of Influence have Listened. (eg Public Forums- where my Questions were Intelligent & Informed and met with "plz tell me more" or "can I pick your brains?" Type of responses, afterwards.I have a number of problems Accessing New Technology- the sheer volume of information is one - it's Time Consuming & exhausting. Poor Quality of info is another. Third would be a lack of (my) understanding, compounded by Sites that are Not Functioning properly or poorly written... this includes Grocery shopping & Government websites. Then there's the Physical Disabilities- plural. My main problem is my Hands - Fine Motor Skilz. I did not even know any products to help with computer use were on the market until two weeks ago. I use a Home Made device to replace the Scroll wheel & saving & Printing a single short article can take me anywhere between 15 -45 minutes. (Try, try, try again - & try Not to Cry from either frustration OR Pain.)

Jax :

18 Jun 2014 11:09:16am

I ask for everything in PDF because print is almost impossible for me, but I can set up a PDF to read it in columns and chunks. For a mouse, I cant use a normal mouse, its all over the place (those tears of frustration) I use a large track ball. l keep my arm rigid and straight on the device and then use my thumb only to move around. It works for me.

As for information? Bad enough. But navigation is my ultimate nightmare. By the time I've gone from here to there to there, to a f\dead end, then back again, then where is it now? Its very likely I'm tense, shaking visibly, my eyesight has just gone awol, and I've actually forgotten what it was I was trying to find. Total overload (frustration and tears).

One of the problems is, even with sites I use a lot, I might know something is there, but each and every time I need to look for it. It never becomes automatic. Each time is like the first time finding it.

Phone menus I have just given up on. I almost always end up in the wrong place, so now I just press anything, and end up in the wrong place, and ask to be put through to the right place. It took a lot of the frustration and stress out of it.

And I "never" tell them I have a disability, or in most cases, for some reason they start SHOUTING INTO THE PHONE and using baby language.

What is with people who think all people with a disability are deaf? If we didnt understand what you were saying, it might mean you spoke a bit too fast, or mumbled a bit and our brain couldnt process it. It doesnt mean we couldnt hear you talking. I found the following phrase helps.

"Sorry, my ears cant quite listen to what you are saying as fast as you can say it. I'm really sorry but can I ask that you just speak a bit more slowly so my ears can keep up?"

It usually works the first time. But if not, just repeat as often as is necessary. Never mind the "huffs" on the other end. At least you get to actually hear what they are saying and can then ask questions.

All these little tricks of interaction (tailor made for our individual circumstances) start adding up to some of the difficulties at least then becoming possibilties. It just takes so long to start figuring some of them out. And lots of trial and error.

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